More

So, I went to California at the end of last week. (I've heard talk that my house will be looted if I talk about trips in advance on a blog. So there. I'm BACK and the door is locked. OK?) The trip was great and probably worthy of a dedicated blog post, but I don't think I have it in me tonight.

One thing that I found crazy though was that on the way there, on the plane, I watched a Lifetime-calibre feature film that was actually pretty good. OK, not great, but it was all about the issues I last blogged about.

And it starred Brendan Fraser. Don't snort!

I know, I know Brendan Freakin Fraser.

So anyway, Brendy and Harrison Ford (in an inspired, curmudgeonly performance-I imagine it's his true personality) really go at it to come up with a drug to save Brendan's kids. I won't give away the ending, but I bet you can guess what it is. And here's the best part...."Based on a True Story" And Felicity as the mom almost made up for Brendan.

It was just one of those times though when I was hammered by the same topic several times in the space of a few days and it starts to feel like a sign or something.

Despite the dismal nature of that Newsweek article, and the fact that the movie implied that you need about a trillion dollars of venture capital to get cures and treatments going for disease (and that was probably the part of the movie that was realistic), I still feel like The Chordoma Foundation is doing some innovative stuff and I'd like to help in my small way.

For one, it's in my own best interest to help. For two, I've been affected by the people I've read about and met. For three, there is no walk, marathon, yogurt lid, or ribbon to help. At least as far as I know. Because this is not one of those big cancers, it's tough to engage mass attention and support (and I totally get that). It's genuinely up to the community of people directly (and I mean directly) affected to help. And I am better placed to help than some of the people who are not doing as well with this disease.

I am not quite sure where to start. I have some ideas, but am totally new to this. I think it could be fun though.

Thinking thoughts

I have been thinking a lot since the end of my treatment. And it extends beyond thoughts of where my next snack is coming from and why all the Real Housewives are so angry at each other. Really.

First, I've thought about the future of this blog. I've thought about pulling a Costanza and "leaving on a high note" now that my treatment is over and I am cancer-free (ostensibly, for the first time in my life). What do I blog about now?

I am not as clever, witty and skilled as some of the uber-mommy bloggers, and at this point, because of the way this blog started, I don't think I can resort to blogging around pictures of my kid spitting out vegetables-entertaining as that may be. Besides, that's what Facebook is for.

But, the more I thought about it, I realized that I might as well continue to do this as long as it's useful and enjoyable for me. That's the reason why I started this blog, after all. Besides, I realized that this is of a new chapter of my life and it might present its own interesting things to write about. And if they're not interesting, well, I apologize in advance.

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So I've also been thinking about this interesting video someone on the listserv sent around which is a speech made by the founder of the Chordoma Foundation. If you have about twenty minutes, it's worth a look, but I am too inept to get the link up at the moment in a reasonable timeframe. Email me and I'll send it.

What's interesting to me is that he refers to the industry I work in, academic publishing, and how the current structure of academia and the publishing industry impedes information sharing which stalls the development of treatments and cures for diseases. And here I thought I worked for a pretty noble industry. But in effect, I may be a cog in a machine that is stalling progress on a cure for my own disease!

And then I read this, which also has a Chordoma shout-out.

And I guess I am pretty naive, but this was all news to me. And shocking. I thought that if researchers thought they had a promising treatment or cure for something that might save people's LIVES, someone would roll out the red carpet and pay them a lot of money and nominate them for a Nobel or something. But instead, the system appears to be set up in such a way as to discourage development. So, many smart people are coming up with good ideas for....nothing? OK, maybe publication and tenure in some cases, but those things don't quite compare to a legacy, or saving a child's life, do they?

So that, and Josh's inspiring talk, and the stories I've read and heard about other Chordoma patients just make me feel like I have to do something, even if it's a very small, somewhat insignificant something.

More thoughts on that soon.

Seis de Mayo

Well, I had my last treatment on Thursday. Yes it's true. It was supposed to be on Wednesday, but the ole cyclotron was acting up, so it was postponed by a day. Even though proton radiation is still an advanced cancer treatment, I do think I will be looking back on this 3-story behemoth in the not-too-distant future and it will seem a lot like the days when it took an entire room to house the computer that could power a game of Pong. In other words, a much smaller apparatus will be along very soon.

So, today you get a treat! Pictures! (I totally forgot how to post pictures properly, so I struggled with this one. I am the least tech-savvy blogger I know, I think.)

Here is the cuddly behemoth.

There is no floor under that table, you're kinda just suspended there. Looks like a place where evil aliens would do bad things to you, no? And to be honest, in my recent experience, that has not been so far from the truth. Except that they're people. And they are very nice.

Don't I look a little maniacally happy in this photo? You can tell it's my last day, huh?

Since my last treatment was SUPPOSED to be on Cinco de Mayo, D went wild at the party store to get festive, themed decorations. It was sweet. And I don't know anyone who likes to go to the party store more than he does. But then my treatment was delayed for a day so here I am below with some of the staff at the Proton Center celebrating "Seis de Mayo". They couldn't resist a sombrero.

D also brought a couple of nips of Cuervo so we both did a shot of tequila. I bet that doesn't happen there very often, but I guess you never know.

Then I got to ring "the bell" in commemoration of my last treatment and C helped me as you can see.

I thought I would get choked up and cry due to the catharsis of it all. When I think all the way back to diagnosis and the fertility stuff and everything that has followed, it just feels kinda overwhelming. But in the end, it was just a happy, fun day. And I had another one of those waves of relief that I've had several times during this experience.

What is done?

Yesterday was a tough day. I realized I've been compartmentalizing a lot of this experience and trying to muscle through each hurdle as it comes up with the ultimate goal of getting to my last treatment and putting all this behind me. It's a tactic that has worked well for me, and it's made everything OK. Sometimes I'll think back to one particular thing and think, "God that s*cked, I'm so glad that's over." but in the moment it wasn't so bad. Maybe because I had the end in my sights.

But after talking to the doctors yesterday I was faced with the fact that it's not really over on Wednesday. I still have the possibility of recurrence which affects when and how I try to have another child. Recurrence is not something I've given much thought to (thankfully), but when you don't think about the boogeyman very much, when he DOES pop into your head, he's pretty damn scary.

I was also told that I can't run anymore. I cried. I guess that takes care of my marathon dream. It was something I was looking forward to starting up again this summer. I guess in my uninformed medical opinion, six months after surgery sounded good to me. After he told me that, my running life flashed before my eyes. Don't get me wrong, I've never made my living by running. My fastest mile was probably 7:30 and I never got beyond 9 miles in a go. But it was fun. I had a lot of good races. I'd run in a lot of different places. It's something you can do anywhere, without any equipment and you feel good afterwards.

We talked a bit about the fragility of my pelvis due to the radiation (basically, if I break it, I'm in trouble) and the possibility of cancer in the future resulting from radiation.

Nothing we discussed was a surprise (except maybe the running part), but more of a reminder that there are things I have to look out for and be careful of and fear, to some degree.

I realized this isn't entirely over on Wednesday. My life is changed rather than interrupted.